My disease has not yet developed to the point where it can be distinguished as any one established disease, yet every day I feel as if my body is slowly weakening. New and strange pains arise, old issues resurface, and daily discomforts worsen. Repeat tests are ordered, labs drawn, new doctors, same doctors, all showing that, on paper, I am the same as when first diagnosed: I still do not meet the criteria for any matured and definitive disease.
As one can imagine, this can get frustrating. I often feel as if my pain is somehow invalidated by a vague diagnosis. However, I recently came to a realization that just because what my body is doing cannot be clearly defined or definitively treated does not mean that it isn't a real problem. Undifferentiated leukemia is still cancer, however uncertain or unfocused it may be. I need to start recognizing that my pain is validated, that it's not just myself being paranoid or hypochondriac: I do have a very real disease, and it does cause very real pain. My immune cells are attacking themselves and causing inflammation that can be very unpredictable, even for doctors who see this all the time, and for myself, even with daily monitoring and management of my symptoms. It's not the doctors' faults, and it's certainly not mine for having these complaints. My symptoms are real, my pain is real, and I'm doing the best I can managing it all with my lower quality of life.
Autoimmune diseases are poorly understood and recognized throughout the world. On more difficult days, it is helpful knowing that I am not alone in my fight and that I have not only a team of doctors, friends, coworkers, and family behind me, but a whole community of patients who have felt the same way at some point. I can continue my pain management, and continue to let my doctors know of all my new developments, but I should trust them to do what they feel is best, and trust myself to know my body.
"Undifferentiated connective tissue disease (UCTD) is a systemic autoimmune disease. This means the body’s natural immune system does not behave normally. Instead of serving to fight infections such as bacteria and viruses, the body’s own immune system attacks itself. In UCTD, autoimmunity may cause the immune system to attack specific parts of the body resulting in a variety of problems. The phrase “connective tissue disease” is used to describe the diseases of the immune system that are treated primarily by rheumatologists. These represent systemic autoimmune diseases that often involve the joints, cartilage, muscles, and skin. They can also involve any other organ system such as the eyes, heart, lungs, kidneys, gastrointestinal tract, bone marrow, nervous system, and blood vessels. Examples of connective tissue diseases include lupus, scleroderma, rheumatoid arthritis, Sjögren’s syndrome, myositis, and vasculitis. There are many people who have features of connective tissue disease; however, they do not fulfill the diagnostic criteria established for any one disease. In such circumstances, they are often considered to have “undifferentiated” connective tissue disease. Over time, people with UCTD may evolve into one of the more specific connective tissue diseases, such as lupus, Sjögren’s or scleroderma."
